Newbie Haleyalexxis

[Haleyalexxis]

Hi! My name is Haley, I’m 20 years old. I’ve suffered from “dry skin” all my life. When I was younger they said it was eczema. Doctors always said I would grow out of it. I think I was about 13 when they started calling it psoriasis. My psoriasis covers more than 90% of my body. Its definitely gotten worse with age. Ive used topical steroids religiously for most of my life.  I have a bunch of other medical stuff going on as well. I have seen a million and one specialists, no one could ever really help me. A few of my specialists tried getting me in to National Institute of Heath and after 3 long years I was finally accepted and had my first visit in February of 2017. I thought that was going to by big break. Finally get a cure and be able to live a normal life. Well, turns out the NIH is stumped too. Patiently waiting, still. 

As far as my psoriasis goes we tried Stelara first. I stayed on that a few months, showed no signs of improvement. Then, they put me on Humaira. I’m currently still on the Humaira (40/0.8 ml biweekly). No improvement as far as skin goes but hair (alopecia) and nails have somewhat gotten better. Now I just started Acitreten (7-30-18). I hear a lot of negative things about the drug, but hopefully it will help.

[Caroline]

Hi! My name is Haley, I’m 20 years old. I’ve suffered from “dry skin” all my life. When I was younger they said it was eczema. Doctors always said I would grow out of it. I think I was about 13 when they started calling it psoriasis. My psoriasis covers more than 90% of my body. Its definitely gotten worse with age. Ive used topical steroids religiously for most of my life.  I have a bunch of other medical stuff going on as well. I have seen a million and one specialists, no one could ever really help me. A few of my specialists tried getting me in to National Institute of Heath and after 3 long years I was finally accepted and had my first visit in February of 2017. I thought that was going to by big break. Finally get a cure and be able to live a normal life. Well, turns out the NIH is stumped too. Patiently waiting, still. 

As far as my psoriasis goes we tried Stelara first. I stayed on that a few months, showed no signs of improvement. Then, they put me on Humaira. I’m currently still on the Humaira (40/0.8 ml biweekly). No improvement as far as skin goes but hair (alopecia) and nails have somewhat gotten better. Now I just started Acitreten (7-30-18). I hear a lot of negative things about the drug, but hopefully it will help. 

Hello Haley,

Welcome to psoriasisclub..
I see you have been copying and pasting. It is easier to type in directly on the forum.

You have a strange order of treatments, from Stelara to Humira and now Acetretin. For most it is the other way around.
Anyway, it may very well be that you react better to the Acetretin. Who knows. Good luck anyway.

There are several here on the forum that have used it, they may have some comments.

Have fun over here with us, we are a nice bunch of sufferers.

Cheers,
Caroline

[Fred]

Hello Haley   to Psoriasis Club.

I agree with Caroline that is an odd way to go as it's usually an oral treatment then a TNF then an IL Bio. Maybe worth you asking for Cosentyx or Taltz as that would normally be the next ones after Stelara.

But unfortunately you won't get a cure, it's all about management and it can take time to find what works best for you.

Have a good look around and just dive on in you will find a friendly bunch always willing to share and listen.

Regards.

Fred.

*I made an edit to your post to tidy up the font

[jiml]

Hi! My name is Haley, I’m 20 years old. I’ve suffered from “dry skin” all my life. When I was younger they said it was eczema. Doctors always said I would grow out of it. I think I was about 13 when they started calling it psoriasis. My psoriasis covers more than 90% of my body. Its definitely gotten worse with age. Ive used topical steroids religiously for most of my life.  I have a bunch of other medical stuff going on as well. I have seen a million and one specialists, no one could ever really help me. A few of my specialists tried getting me in to National Institute of Heath and after 3 long years I was finally accepted and had my first visit in February of 2017. I thought that was going to by big break. Finally get a cure and be able to live a normal life. Well, turns out the NIH is stumped too. Patiently waiting, still. 

As far as my psoriasis goes we tried Stelara first. I stayed on that a few months, showed no signs of improvement. Then, they put me on Humaira. I’m currently still on the Humaira (40/0.8 ml biweekly). No improvement as far as skin goes but hair (alopecia) and nails have somewhat gotten better. Now I just started Acitreten (7-30-18). I hear a lot of negative things about the drug, but hopefully it will help.

Hi Haley and   to the club I'm sorry to hear of your experience of psoriasis it's an unpleasant disease for us at any age , and you say you're pretty well covered in it ...topical creams are ok for short term use on small parts of your body ...I myself developed psoriasis at the tender age of 17 and if you're anything like me it knocks your self confidence ..there is a drug out there that should work on you and it seems as if your dermatologist is trying by hit and miss to see what works ....most of the drugs take time to work so don't give them up too quickly
You say you have been on Biological like Stelara and currently on Humira and also acetretin but see no improvement ....I hope the acetretin kicks in and helps get you clear skin

It is possible to get a normal life again Haley but it's a bit hit and miss finding what works

There are lots of new drugs in the pipeline that all target slightly different cells so keep your eyes peeled for new drugs here  
Fred has already mentioned Cosentyx ans Taltz if I were in America I think I would be trying to get one of those
Meantime you have joined a great social group of sufferers who understand your predicament and are all happy to share their experiences and advice with you

Come back often and see us for a chat or to ask questions or to have a virtual drink in the bar where I'm regularly found ... [Group Specific]

Jim

[Grizzly Bear]

Haley

You are amongst fellow sufferers, ask any questions you may have, we will do our best to answer you.

As for dry skin, use raw virgin coconut oil. Not only does it have natural healing properties, it’s fantastic on your psoriasis Haley

Hope that you like our site Haley and join in the fun

GB

[KyPrincess]

Hi. Welcome to the club.

[Wooley]

Hi Haley

Welcome to the club!!  Enjoy looking around, there is lots of advice and support on here that's for sure.....

I am taking Acitretin too 10mg daily so a low dose for me, that said i have a different kind of psoriasis - pustular, which is confined to my hands and feet, but thankfully, I have been mostly clear for over a year now, so I am happy on this drug for the time being.....no side effects to mention for me anyway....

Good luck

wooleyb 

[Haleyalexxis]

 Haley  

You are amongst fellow sufferers, ask any questions you may have, we will do our best to answer you.

As for dry skin, use raw virgin coconut oil. Not only does it have natural healing properties, it’s fantastic on your psoriasis Haley  

Hope that you like our site Haley and join in the fun  

GB

I usually take coconut oil baths! I also really like using olive oil too!

[Haleyalexxis]

Hi Haley

Welcome to the club!!  Enjoy looking around, there is lots of advice and support on here that's for sure.....

I am taking Acitretin too 10mg daily so a low dose for me, that said i have a different kind of psoriasis - pustular, which is confined to my hands and feet, but thankfully, I have been mostly clear for over a year now, so I am happy on this drug for the time being.....no side effects to mention for me anyway....

Good luck

wooleyb 

Thank you. I'm excited about getting into this! 

They started me on 20mg, now I take 30mg. I've been on it for 15 days now, I take it daily. I don't know about the side effects because most of the side effects I hear about I already suffer from (brittle nails, rapid growing nails, splitting nails, hair loss, dry mouth, dry eyes, etc.) .  I'm glad to hear you haven't had any and that you've been mostly clear for a year. I hope your skin stays clear. hopefully I can say the same about mine soon!!!

[Haleyalexxis]

Hi! My name is Haley, I’m 20 years old. I’ve suffered from “dry skin” all my life. When I was younger they said it was eczema. Doctors always said I would grow out of it. I think I was about 13 when they started calling it psoriasis. My psoriasis covers more than 90% of my body. Its definitely gotten worse with age. Ive used topical steroids religiously for most of my life.  I have a bunch of other medical stuff going on as well. I have seen a million and one specialists, no one could ever really help me. A few of my specialists tried getting me in to National Institute of Heath and after 3 long years I was finally accepted and had my first visit in February of 2017. I thought that was going to by big break. Finally get a cure and be able to live a normal life. Well, turns out the NIH is stumped too. Patiently waiting, still. 

As far as my psoriasis goes we tried Stelara first. I stayed on that a few months, showed no signs of improvement. Then, they put me on Humaira. I’m currently still on the Humaira (40/0.8 ml biweekly). No improvement as far as skin goes but hair (alopecia) and nails have somewhat gotten better. Now I just started Acitreten (7-30-18). I hear a lot of negative things about the drug, but hopefully it will help. 

Hello Haley,

Welcome to psoriasisclub..
I see you have been copying and pasting. It is easier to type in directly on the forum.

You have a strange order of treatments, from Stelara to Humira and now Acetretin. For most it is the other way around.
Anyway, it may very well be that you react better to the Acetretin. Who knows. Good luck anyway.

There are several here on the forum that have used it, they may have some comments.

Have fun over here with us, we are a nice bunch of sufferers.

Cheers,
Caroline

thankyouthankyou!! 
yeah, I was on my phone at the time so it was hard to use the site.